Hydrocephalus, many patients feel alone and isolated, how about you?

In my experience I have to say that I really have been left on my own to deal with this. Drs who diagnosed me also said, in the same breath, that they did not have enough experience to deal with such a case. Having no rehabilitation of any kind has really taken us by surprise and it is our hope that this changes in 2018.

Some useful information for adults who may have recently been diagnosed or for families who may be concerned.

http://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Adult-Onset-Hydrocephalus

The brain, a miracle that is you!
It is astounding that so little is known of the human brain and yet it is the most vital of human organs which determines our every day existence.



The one thing the Drs told me was 'don't think too much,' Yet they have not told us anything about the effects of Hydrocephalus, and that they did not have enough experience in dealing with the condition and rather took a patch it up and leave them to get on with it approach and that is partly why I decided to write this blog. The frustration can really get you down sometimes, so I thought it may help you to share some Hydrocephalus links.

We have found the Shine Charity to be a useful resource
https://www.shinecharity.org.uk


And the Brain & Spine Foundation Helpline has been a tremendous help to my family.

https://www.brainandspine.org.uk

The Hydrocephalus Association has been a very useful site for my limited research

http://www.hydroassoc.org


With these 3 links you should have the help that you need.

Meanwhile, I  have so many questions to ask and I have found myself researching in books and online and  yet to speak to anyone directly who has experience and who may be able to help.

What would you suggest?

That is all for this episode.